My life is getting to be useless

Posted by kazeiler @kazeiler, Jan 25, 2023

I am a 51 year old who has had everything go wrong with my body. When I was younger it was for severe migraines, then a large golf ball cyst in my right breast. Then PID which was so painful. Then endometriosis twice in 10 years and now again the pain. My abdomen started degrading to where there is almost nothing now. Just fat and skin no muscle. I’ve had atleast 30 surgeries. Including 3 pelvic prolapse surgeries. I then had been suffering for 15 years of Pheochromocytoma and diagnosed myself and was correct even though they said it wasn’t. I’ve always been correct when it comes to my body. A hysterectomy actually 2 times second to remove my cervix . So many surgeries and before each thing went wrong there was pain. I constantly begged for help. My body has been degenerating this whole time. I have issues with my feet and spine, neck and back. I’ve had to move quite a bit and some doctors were great but then we’d have to move. When I had Pheo I was treated like a dog and a drug seeker. The headaches were deadly. My heart rate would t go up in the hospital and I had no clue it was my blood pressure. Just thought hot flashes. Tremors, sweating. Hospital after hospital. Maybe 50 times or more. 15 years of it. I have PTSD from doctors. I miss my old ones but have to be where my husbands job is. I’ve been suffering with chronic pain all of my life. I’m in Michigan now where I’ve been doing everything they said paid for everything they did but still won’t put me back on my medication. I am now at home I do nothing. I can barely walk, sleep, sit. Anything. I can’t go anywhere or do anything I use to when I was being treated. When I was treated I had a job, did everything by myself. No I’m nothing! I’m literally dying in my house day by day. Has this world come to this, where my dog can get medication but I can’t. I have a psychiatrist but even she won’t give me clonazepam. I was on oxycodone and clonazepam. And other things I needed. I need a chance to be human again. Live without extreme pain. Cortisone shots, antidepressants and buprenorphine which doesn’t work at all. Or maybe a tiny bit. I cry everyday. Why? I have a prolapse again no pain treatment. Hernias, no pain treatment. My stomach muscle severe pain. When I was treated o never asked for more. I stayed on my same regimen day to day. Life was good I was still in pain but my doctors were good. I shouldn’t have to suffer this way. I’m writing this and I’ve never done this before but I wish a doctor could see me. A grown adult. I know my body better than anyone. I’ve tried everything in 30 or more years. I know what works. I pray for a humane doctor. I have just given up. Waiting or looking or even thinking there is one who cares about me. I can’t even shower. Takes me 3 weeks. But they don’t care. Please send me someone who will. pleas tell me what to do? Abby

Interested in more discussions like this? Go to the Chronic Pain Support Group.

If there is pain, it is medicine, if no pain, it is a drug. World never got that and druggies make it difficult for those with pain. PHARMA appeases druggies

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@cynthiapotter

@kazeiler my heart went out to you reading your posts. I'm new to this group, and I have to say everyones reply to you is so comforting.

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Welcome @cynthiapotter. Thank you for contributing to the conversation. If you're comfortable sharing, may I ask what drew you to Connect?

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I have unrelenting abdominal pain after gallbladder surgery. Flare ups with burning URQ pain, acid reflux, can barely eat and lose weight quickly. Eating equals pain. Get on PPI and last flare I got control of in 3 months and off omeprazole. Recent flare no relief, pain is daily and I’m barely functioning, Drs have tried so many meds and sent to several specialists. Mixed opinions on going to a pain clinic from Drs. One says go one don’t. I am in counseling trying to learn techniques to cope, I agree about meds adding fuel to the fire but how does one function with constant pain? How do you get relief? This recent flare seems to have no end. Tests don’t reveal answers, but do have hyperparathyroidism as well and because of past same surgeries can’t locate so in limbo. Also multinodular thyroid they are watching because of Braf gene mutation abnormal but not cancer. Sorry to sound so rambling but what do you do for pain when you need help? Surrender to the opioids and Valium offered? Any helpful insight? Thank you

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@jholland

Can you just function with an implant or do what you like as sports, walk five miles, ride a horse,……

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I would say no. I had a Medtronics implant a few month ago. So far some help but not really blowing my skirt up.
I think if Medtronic had done a. Eternal job of explaining what to expect AND how the thing works.
I compare it to giving a new driver a car and only showing them where the gas and brakes are. And telling you “good luck”

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@jholland

Can you just function with an implant or do what you like as sports, walk five miles, ride a horse,……

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I go to the gym for 4 to 6 hours every week, because I try to keep my body in a decent shape.
But one could just do a sedentary life with the implant alone. But the implant allows me to be physically active again.

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You are NOT NOTHING!!! I was in an elevator accident in 2000... Things have gone BEYOND south. Large Labral Tear, C5-6 surgery 15 years later, now I am having movement L-5, L-5 - S-1 to the left. I have had such depressive episodes.
I won't go into it ALL... Falling breaking bones, stints in hospital.
The ONE THING I DO KNOW... I am SOMETHING. I am a tail of how to get through surgeries, physical therapy, extra bills not disclosed, how to eat after bariatric surgery, how to get off Fentanyl, and the hope of a future....
Just breath... 7 seconds in through the nose 11 seconds out through the mouth. When the world comes crashing in... contact here. Someone will see it...

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@msddsq

I have a storied history as well. I am confused by your first post. What worked in the past?
You need to find someone who will manage your care with what works or worked. The medical doctors have swung too far to the opposite side with pain management but there is some new literature coming out that some of us need things that are controlled substance. They say its addicting but I say, if my body needs insulin, and I have to take it for the rest of my life, isn't that the same? If my body needs a small amount of a chemical regardless of what it is , am I addicted? Or is it lacking a chemical and I need to replace it? I don't abuse it, I don't need more and more. I am not addicted, It gives me a better quality of life and controls so many things that make that quality of life better.
In addition, look at the Pain Management site on this website. There are a lot of good ideas like Interthecal pain management and Spinal Stimulators as well.

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I love the way you explained it. Yes it is pain medication that helped me. All of my other doctors seemed to think it worked as I have. I never asked for more, never lost or stolen or ran out before the fill date. If something so easy can make help a person live their life and be in society again. They should do it. I have plenty of proof I’m in pain. Not everything is seen on MRIs and CTs. But with all of my surgeries obviously there’s pain along with my spine and others. I’m in Zeeland Michigan. I do have a referral to the Michigan pain consultants. In Holland. We’ll see if they can help. My only fault is having to move with my husband. It’s sad doctors can’t read or follow the last doctors way. If anyone has a referral they can give me for a pain doctor who will follow my last doctors way. I’d be grateful. Or if a doctor reads this please contact me if possible. Thank you all for listening and making me smile with your words and prayers. Abby

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@lindes

They use multiple approaches depending on the pain and it's location. I have a spinal nerve simulator implanted to take care of my lower back and leg pain.

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I have had the Nevro spinal nerve stimulator implanted and I have more pain now than before.

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I’ve read if a woman ever has endometriosis she’s most likely going to develop an immune disorder or 2

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@msgrstclair

I have had the Nevro spinal nerve stimulator implanted and I have more pain now than before.

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I learned that those things don't work well, if the surgeon does not know how to properly implant them.
I m pain free, and have no taken any pain pills for the last 3 years.

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